Tag: Weeks Missing

From my MP, the Rt. Hon Nick Brown:
“Due to my obligations as Opposition Chief Whip, I will not be able to attend the Westminster Hall debate on 20 February. It is also convention that the Opposition Chief Whip does not sign Early Day Motions, so I will not be able to add my signature to EDM 271.”

So, I’ve just sent a postcard to Caroline Dinenage, Minister for Health and Care, for Thursday’s June 21st debate.
Except it’s this big. . . And my lived-truth message is on the front of it.

💙💜💚

What else does the UK Minister for Health & CARE not know about Myalgic Encephalomyelitis?

That for 250,000 UK ME patients there is:
NO CARE
NO Appropriate Guidelines/ Policy
NO Teaching NO Knowledge
NO Doctor NO Consultant
NO Research NO Treatment
(ME is not taught in Medical Schools or Training Colleges)

WHAT ME PATIENTS NEED

6 POINT PLAN:
1). Allocate funding commensurate with disease burden for Biomedical Research into ME
2). Dangerous practices of GET and CBT to be removed immediately from NICE guidelines
3). ME to be taught in Medical Schools and training colleges including Acute & Community care
4). Appointment of trained ME specialists/consultants
5). All General Practitioners and Consultants to be informed
6). Treatment

I’m about to turn round and look at the empty shoes of *400 Missing* people living with ME at #SouthamptonMillionsMissing , May 12th 2018

This picture amazed and delighted me. My friend of 30 years, who I can never see due to my being bed-confined and unable to receive visitors, is not even a member of the ME awareness-raising movement. But, created this silhouette to represent me, just in case we marched on the castle with flaming torches! At the #DurhamMillionsMissing Visibility Action May 12th 2018.

Here I am at #DurhamMillionsMissing. May 12th 2018 There’s a certain irony about this photograph. My posterboard is in my wheelchair, but in reality I, myself, have been too ill to physically sit in a wheelchair and maintain an upright position since 1993.

This is Isla. She is my/ our youngest supporter so far. Isla is 5 years old and she and her mother Kirsty shared my story at the #ManchesterMillionsMissing UK, May 12th 2018.

Isla looked at my photo and was very worried about me.
If only Jeremy Hunt, UK Minister for Health & Care would show the same humanity.

Let’s encourage new generations and acknowledge their compassion. — with Kirsty Edgson.

With Claire Tripp at Radio Solent raising awareness of ME and very severe ME during ME Awareness Week May 2018.
Credit: Tom Mitchell’s fantastic advocacy seen on his posterboard bottom right. You can read all the words! — with Tom Mitchell.

Another very special friend who also travelled to Durham and who still supports me *after 25 years* with practicalities and with the hellish, relentless bureaucracy that is life with ME, in the UK 2018. — with Dawn Young.